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Who We Are

The Smith-Lemli-Opitz Foundation works worldwide to improve the quality of life for people with Smith-Lemli-Opitz syndrome.
Our SLO families
Smith-Lemli-Opitz Foundation

The Foundation's History

In 1990, 37 families living with SLOS founded the Smith-Lemli-Opitz Foundation. They wanted to help the estimated tens of thousands of individuals around the world living with undiagnosed SLOS and families facing significant challenges including surgeries, therapies, a revolving door of doctor appointments, and countless unanswered questions. 

Since then, the Foundation has grown to more than 1,000 families from around the world who share experiences and information about Smith-Lemli-Opitz syndrome.

Supporting families is important to the Foundation’s mission. The Foundation fulfills this mission by providing informal networking and social media interfaces to connect families into a caring community, a free lifetime membership to the Foundation and its network, and national SLOS scientific and family medical conferences held every other year. 

During these conferences, physicians, scientists, parents, and caregivers from around the world collaborate and  learn from each other.

The Smith-Lemli-Opitz Foundation continues to raise awareness of the syndrome and funds research to improve treatments with the hope of someday finding a cure for Smith-Lemli-Opitz syndrome.

Our Leadership

Generous leaders caring for families

The Smith-Lemli-Opitz Foundation is governed by an all-volunteer Board of Directors made up of parents of individuals with Smith-Lemli-Opitz Syndrome. Our Board members live on three different continents and bring varied life experiences and skills to realizing the mission of the Foundation.

The Smith-Lemli-Opitz Foundation is fortunate to be assisted in its work by a brilliant and generous Medical & Scientific Advisory Board. The members are medical experts with decades of experience in the research and treatment of individuals with SLOS. They give their time and talents to improve the lives of our members.

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The heart of our logo

The heart of the Smith-Lemli-Opitz Foundation logo symbolizes the genetic bond all our families share and the love we feel for our children. The colors GREEN and BLUE are a nod to the colors of our planet and represent our foundation’s global reach.

Our Commitment

Improving the quality of lives

Your life and the lives of others

Our Commitment #1

Our Commitment

We commit to providing you timely and credible information.

Our Commitment #2

Our Commitment

We commit to connecting you with others who understand and can help.

Our Commitment #3

Our Commitment

We commit to advancing research into SLOS for improved treatments and a cure.

We help increase the awareness of Smith-Lemli-Opitz syndrome.

From education to research we work together to find treatments and support.